YES there is an enormous pain in the arse that comes with having a “rare” condition….NOT in a physical sense…but in EVERY other way!

with a “RARE” condition you spend years and years trying to define (in my case) invisible layers of symptoms for almost 10 tens. It is SOUL DESTROYING as you know that your GP is listening, but your symptoms are so abstract and seeming unrelated to them, and effectively not proven to be there, that they get jotted down…but with no particular signposting happening initially.

with the value of hindsight, i have been symptomatic for too many years to count. The rough timeline of symptoms in my recollection is:

neck and shoulder pain back when i retired had already been an issue

irregular heart beat.

numb lower right leg – not so numb to walk on but weirdly not the right sensation